Latest entries
Maya shapes her identity as a young girl with cerebral palsy

Maya shapes her identity as a young girl with cerebral palsy

Lately, Maya has been crying a lot about having cerebral palsy.  She has cried about having to use a wheelchair, about not being able to move her body the way she wants and about lacking the independence and freedom she desires. She is also frustrated with her epilepsy, her restricted diet and problems with her...
Wheelchair users are not all the same

Wheelchair users are not all the same

  Perhaps it seems obvious but wheelchair users are individuals with a diversity of feelings, perspectives and ideas. This still holds true for wheelchair users who have CP too. No matter what commonality you can wrap around a group of people it is still important to honor and acknowledge them as individuals.  This point was...
Strategies for creating balance when your child has CP--It's tough!

Strategies for creating balance when your child has CP–It’s tough!

Creating balance in your life when you have a child with cerebral palsy or any other chronic health condition can be difficult. Ever since my daughter’s diagnosis of CP eight years ago, I have struggled with the ongoing tension between wanting to seize opportunities to encourage her greatest improvement and not making our life all...
Insomnia affects the entire family

Insomnia affects the entire family

Maya has always had insomnia and for a diversity of reasons. When she was an infant my husband and I took turns sleeping with her in a recliner at night for six months because she was so uncomfortable laying down in her crib. Now at the age of nine (almost) her sleep patterns have improved greatly from waking...
CP NOW a new 501c3—Our next step

CP NOW a new 501c3—Our next step

  It’s been almost four years since I started CP Daily Living. I never imagined that my idea for creating a small resource about cerebral palsy would evolve as it has, into an international hub of information, collaboration, and support. Many of you have sent me touching letters and offered comments of encouragement that have...
Be a wise consumer––know the power of the placebo effect!

Be a wise consumer––know the power of the placebo effect!

I have been sharing information with parents, families, and individuals with CP for several years now. I have sat in on professional conferences, listened to many of you share your passionate experiences with treatments, and had the opportunity to chat with some very dedicated and level-headed CP docs and therapists. Plus, just like all parents...
The little girl who crawled up the Capitol steps 25 years later: Jennifer Keelan and the ADA

The little girl who crawled up the Capitol steps 25 years later: Jennifer Keelan and the ADA

Jennifer Keelan was 6 years old when she participated in her first disability rights protest. After that she participated in a protest every six months! At age 7 she was taken into custody during a protest in Montreal, and at age 8 she became an iconic symbol of the disability rights movement when she insisted...
Leaving terms like "special needs" behind for more function/support focused language

Leaving terms like “special needs” behind for more function/support focused language

I have been thinking a lot about terminology used to describe Maya and other people who have “special needs”, “disabilities” etc. To clarify my intention these are words I use to signal a need for support that is not usually part of mainstream design, thinking and planning. Although I try not to get too bogged...
18 Products and One Adult with CP That Make Our Life Better

18 Products and One Adult with CP That Make Our Life Better

Over the last eight years, my husband and I have tried out countless adaptive and non-adaptive seats, chairs, blankets, silverware, cups, bikes, trikes, swings, wheelchairs, standers, walkers, etc., while trying to find what works best for Maya and for us as her caregivers. Since I know so many of you are pressed for time yet eager for...
The Complexity of Vision Problems in Children with Cerebral Palsy

The Complexity of Vision Problems in Children with Cerebral Palsy

This is the third post in a series of posts regarding vision and cerebral palsy. Here are links to parts one and two. Until last year, when I saw Dr. Christine Roman-Lantzy speak on Cortical Visual Impairment (CVI) I knew very little about the complexities of vision and visual processing. After that lecture, I realized...

Introducing the term “Early Developmental Brain Injury (EDBI)” and a new framework for discussing cerebral palsy

It’s been 10 years since professionals and scientists last revisited the use and relevance of the term “cerebral palsy.” During that time knowledge about brain function and neuroplasticity has increased exponentially. For that reason, it’s now time for a change that reflects a more modern understanding of this condition and conditions associated with having a...
Things to know about including Maya in your classroom-Creating a Teacher's Resource Guide

Things to know about including Maya in your classroom-Creating a Teacher’s Resource Guide

The following is a resource sheet, the Teacher’s Resource Guide (TRG) which I compiled for Maya’s new teachers to help them better understand her behavior, how she learns, and how to optimize her participation in the classroom. She attends a private school and Miss K. is her teaching assistant/aide. Her primary teacher has more detailed information...